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--- john neal <nealams2003@...> wrote:

> I have been following these groups off and on for

> quite some time now, but have not really

> participated much. Now I have found myself in a bit

> of dilemma and would appreciate some feedback. To

> follow is my story. Thanks in advance for your

> input! Neal.

>

>

> I am HIV positive and currently afflicted with

> Autoimmune Hemolytic Anemia and Kaposi’s Sarcoma,

> the KS is also involving my left eye with a

> possibility of CMV. This has been a worsening

> situation for eight months and I first sought

> medical advice only two and a half months ago. This

> has resulted in a recent diagnosis of AIDS.

>

> First diagnosed with HIV in 1993, I completely

> trusted the medical establishment and followed

> advice/treatment without question. I was taking

> antiretroviral drugs from 1996-2000; however, for

> the past five years I have refused any such

> treatment after concluding the " Cure was worse than

> the Disease " . After I decided for myself to

> discontinue HIV treatment I discovered the dissident

> point of view.

>

> By March my condition had progressed to the point

> where I could no longer continue without medical

> intervention. As I am uninsured/uninsurable, I had

> to see a Doctor at one of the local HIV clinics

> under the White Care Act.

>

> The Doctor stated that I had Kaposi’s Sarcoma and

> assumed that for this condition to exist I had to

> have less that 50 T-cells. He prescribed Seprta (a

> broad spectrum anti-biotic) on an ongoing basis as a

> prophylactic treatment for pneumocystis pneumonia; a

> treatment I refused as I had no indication of any

> respitory ailment and deemed this to be an

> incredible misuse of this drug. He also insisted I

> begin antiretroviral therapy immediately. All of

> this before he had seen any lab results whatsoever!

> For treatment of the Kaposi’s Sarcoma I was referred

> to UCSD (University of California at San Diego

> Medical Center).

>

> Lab results revealed that my CD4 count was 330 with

> a viral load of 480,000 and that I was Anemic. My

> primary Doctor had determined that I was Iron

> Deficient. The last time I saw this Doctor I told

> him my Anemia was worsening; a plea he ignored,

> instead he persisted prescribing antiretroviral

> drugs. Dissatisfied with his attitude, inaction, and

> lack of communication between his clinic and the

> Oncologist over at UCSD, I decided to find a

> different Doctor.

>

> I choose a new Doctor at UCSD based upon

> recommendation from a trusted friend. I saw him at

> the beginning of May and he suggested a fresh start

> - physical, labs, and medical history. He said he

> would see me again in a few weeks time. Later that

> evening he called me at home to tell me I had severe

> Anemia and return to the hospital the next morning

> for a blood transfusion.

>

> The next day I went for this transfusion and was

> told that they could not " Cross Type " by blood, as I

> had " Abnormal Antibodies " . It was then decided that

> I would return on Sunday for a blood transfusion -

> at this point my hematocritic count was 14.8 (45-50

> is normal, 15 is critical, below 5 normally results

> in cardiac arrest, stroke, coma, or death).

>

> On Sunday they still had not been able to find me

> the right blood and this would be a high risk

> transfusion, therefore I needed to be admitted as an

> inpatient. After ten more hours they could still not

> find blood - pissed off I went home! On Monday still

> no blood - I told them to call me if and when they

> found some.

>

> On Tuesday they decided to go with the " Least

> Incompatible Match " and admitted me to the hospital.

> Upon admission to UCSD my hematocritic count was 3.8

> - clinically dead! I spent the next three days in

> the hospital (two in ICU) and received five blood

> transfusions. They also performed a surgery to

> biopsy a lymph node to rule out lymphatic cancer -

> remember we still have the Oncologist and Kaposi’s

> Sarcoma in the picture!

>

> The hospital stay was quite an adventure! One

> expects to see a lot of Doctors at UCSD as it is a

> training facility; however in my case I was seen by

> well over 70 Doctors the first two days. In fact

> there were five " Teams " working my case - General

> Medicine, HIV, Hematology, Oncology and Surgery.

> They were coming down from the La Jolla facility,

> the Medical School, and the VA Regional Medical

> Center- it seems as if everybody had to see, ask,

> poke, prod, and then scratch their head.

>

> They were all amazed by the fact that I walked into

> the hospital (still smoking cigarettes) with a

> Hematocrit of 3.8 and wondering how I could have KS

> with CD4 of 356 - actually up from the previous

> month’s 330 with a decrease in viral load to

> 329,000, without any treatment at all.

>

> Meanwhile, I’m taking this all in stride and they

> are all saying I should have been dead!

>

> I have my own theory - that I voiced loudly to

> anyone that was actually listening - of what was

> really happening, and that is maybe my illness has

> NOTHING TO DO WIT HIV AT ALL! I am genetically

> predisposed Spherocytosis - both my father and

> sister have it and my sister has suffered from

> Anemia. The genetic origins of Spherocytosis are the

> same as Kaposi’s Sarcoma, the Eastern Mediterranean

> - odd as we are of French and Scot decent but the

> gene got there somehow. Older men in this region

> live for years with KS without incident.

>

> As to the " Abnormal Antibodies " that prevented

> " Cross Typing " of my blood, I suffered from ITP

> (Immune Thrombocytopenic Purpura) back in 1997 -

> another autoimmune disorder that attacks the

> platelets instead of the red blood cells. This was

> eventually treated successfully by infusion of IVIG

> (immunoglobulin). IVIG is a blood product containing

> antibodies from thousands of donors and I received

> twelve infusions of this stuff. No real mystery as

> to the origin of the " Abnormal Antibodies " - THEY PUT

> THEM THERE!

>

> I concluded that none of this HIV related; therefore

> I DON’T HAVE AIDS! Of course none of the HIV people

> wanted to hear this and most others ignored it.

> However, I did turn a few heads and got some puzzled

> looks. Then one of the Hematologists gave me a

> slight smile through pursed lips and said with a

> wink and a smile, " You walk into my hospital with a

> Hematocritic of 3.8, you can do whatever you want,

> you’re bullet proof " . One of the other Doctors

> confirmed I was right to refuse to take the Seprta

> the first Doctor prescribed. Alas, somebody was

> listening!

>

> Meanwhile, with my Anemia stabilized and my

> Hematocrit at 28 - above the critical 15 and below

> 30 that the CDC uses to define AIDS - I am back

> across the street at the Ambulatory Care Center in

> the clutches of the Oncologist and HIV Specialists.

> This last week we began treating the KS - and

> killing red blood cells - with chemotherapy by

> infusion of Doxil. Now it is time to confront the

> issue of antiretroviral therapy. Is it time once

> again to endlessly consume protease inhibitors,

> nukes, and non-nukes until my liver bursts?

>

> Now I am faced with the dilemma of caving into the

> established thinking and conforming to their

> protocol or being labeled as " Non- compliant " . The

> CDC instructions are not to treat " Non-Conforming "

> patients for non-life threatening ailments - this

> instruction was downloaded directly from the CDC’s

> own web site and shown to me by a dissident friend

> of mine.

>

> I am seriously ill and do need medical treatment. I

> also know that the HIV people truly believe in what

> they are doing and that they are right. This last

> hospitalization has bankrupted me - I have had to

> spend down all by assets to less that $2,000.00 to

> qualify for Medi-Cal. I am not able to work and have

> applied for Social Security - thank God I have paid

> off all my credit cards and have plenty of credit

> available or I would wind up homeless! I risk losing

> these benefits also if I am labeled as

> " Non-Compliant " .

>

> I do not consider myself a dissident per se, but I

> do see many valid observations and a rational and

> logical thought process on their part. I tend to

> agree with Duesberg’s perspective in that if

> HIV exists at all it is another harmless retrovirus

> that plays little or no role in developing AIDS and

> that this is a " multi-factorial " syndrome. Kary

> Mullis stated that using PCR to detect viral load is

> a misapplication of his technology - in fact he

> called it a viral load of crap - and all along he

> has been asking only one simple and valid question:

> " Where is the reference? " We are now in our third

> decade of AIDS and the virus is still missing!

>

> I am not convinced the benefits of antiretoviral

> therapy are worth the damage and discomfort that it

> causes, just to achieve some magic lab numbers. Do I

> risk being labeled " Non-Compliant " or do I take the

> drugs?

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